Elly Knaggs Autoimmune Encephalitis

Help Elly Knaggs fight 
Autoimmune encephalitis.

I am a mum of 3 children, and unable to work
due to brain damage from AE. Prior to becoming sick I was a very happy easy going nurse.

MY STORY;
On the first day of April 2020 my life was to change forever.  I just didn’t realize the depth of which I would fall into this dark world.

I woke in the morning of the first of April to
vertigo, something, I had never experienced
before.  I was convinced I was having a stroke or had Covid as I had lost my taste and smell. I spent the afternoon resting.

April second, the day I think reality had set in, I was becoming so dizzy I decided to ring the local doctor who handed me scripts for Stemitell and pathology forms.   I went across to the chemist(pharmacy) where I needed to fill the
prescriptions. While collecting my medication the chemist was very angry with me. He explained my behaviour was not acceptable and
they would not tolerate my swearing, spitting and aggressive behaviour. I was confused and scared and knew deep down something was seriously wrong with me.  I ran back across to the doctor without collecting my medications
and said something is not right.
I was taken into the examination room and it was discovered I had lost vision in my left eye. I was extremely confused and failed the
neurological observations/exams. The doctor rang my husband and explained I needed to go straight to hospital.

My husband drove me to the next town which was the longest car ride of my life. I felt blank, I couldn’t’ talk. I couldn’t do anything but stare blankly out the car window. Armed with a
note from the doctor and leaving my husband and children at the door (remember it’s a
world pandemic so I had to face this alone) I
walked into the hospital. I don’t remember
much of which happened. I do remember I
could not recall my date of birth, where I was, and kept questioning if this was a real hospital. Next, I knew I was prepped for a CT scan and
lumbar puncture. I remember, I couldn’t sign
my name.  I had no idea how to even hold a
pen.
Within a few hours I had anti-viral and
antibiotics run through an IV.  I, then,  remembered a nurse taking down everything and saying you will not be needing any of this. All of a
sudden I was taken upstairs to the ward for
the night and discharged the following
morning with no clinical findings.  
I was referred to a mental health doctor.

When I left the hospital I was confused,
disoriented and slowly losing my ability to talk, think or function.  I hopped into the car and
explained I had no idea what was going on.

The next day my husband took me to a different hospital, where I passed the neurological examination and I was discharged with anxiety
issues due to the Covid 19 pandemic.

All blood tests and COVID testing had
returned normal.  The doctors could not find
anything wrong with me.

Over the next few days the GP who I had seen me kept sending me for different scans to rule out any other cause, all of which kept coming
back normal.

I was rapidly declining, my vision was blurry in my left eye, my taste and smell had not
returned.

Day after day I was slowly losing the ability to function.  I would slur my words and stutter.
My head felt like it was being suctioned from
the edges of my brain. The left side of my body had also lost function. My left hand had seized up and I had terrible pain in my left leg. I could not remember anything, including how to dry myself when I got out of the shower. I couldn’t butter bread, and basic objects no longer had names. I would point and grunt and  to indicate what I needed. I remember my daughter asking me to brush her hair. I vividly remember saying “if you can show me what a brush is, I can figure out how to use it”.

I started sleeping in excess of 15 hours a day.

The pain in my head was unbearable. It was
hard to explain to your loved ones when you
have lost the ability to communicate. Concerned with how quickly I was declining, we
requested a referral to a private neurologist
on the Gold Coast. The neurologist told us I had some sort of inflammatory response in the
brain and I would get better, go home, rest and he would repeat a MRI to make sure nothing had developed over the last few weeks.The MRI was clear!

For the next seven weeks, I was in and out of it I had severe delirium, confusion, aggression and odd behaviour. 

We decided to move back to Queensland as I was not getting better and needed support from family. Then magically, just as the neurologist said, I started to feel better.  My speech and vision abilities returned.  My sense of taste and smell slowly came back. I could identify objects and use cutlery.  I could wash and dress myself again.

After three weeks of feeling great, I took a
turn for the worse.

I could not believe it as I was becoming dizzy again. This was the first symptom I had  back at the beginning of April.

I started to go back down hill. I was in and out of doctors offices with no clinical findings other than constant referrals to a psychologist.  I was at my whits end. I had declined so badly and  I was sleeping 15-19 hours a day.  The spinning in my head was worse than ever.  I felt like my brain was burning and I slowly lost the ability to talk again.  I had moments of confusion, delirium, anger and that progressively worsened over the coming weeks. I started hearing voices in my head.

The scariest moment for me was when I did not recognize my children. I could not figure out who they belonged to. In my mind,  I knew they did not belong to me and I thought what on earth where these small humans doing in my house.  On that same evening  I became paralysed on the couch and I could hear my husband
talking to me but I could not respond. I could not move. I could not talk and I just stared blankly at him. He explained to me that I needed a bath. Water helped sooth and ease my
symptoms and helped pull me out of  delirium.  I then went to bed.


Four long months passed and  I was declining.  I now realize I was slowly falling into a coma.  I could barely stay awake. I could barely function.  I would come in and out of these altered states but never for long. I had come to the conclusion that maybe I did have schizophrenia or bipolar disorders. The doctors kept telling me nothing was wrong with my blood work or scans. I was desperately saddened and falling into a deep depression of helplessness.  

Then I had an angel arrive at my door.  She pleaded with me not to go to the psych unit until I had seen her doctor who specialises in alternative medicine. Just maybe the alternative medicine specialist in Brisbane might be able to
find something no one  else could. Further
blood work was ordered. Once again, all lab work came back normal. The alternative medical doctor, who is terrific, referred me to a
neurologist who specialises in complex cases.  She was the only doctor who believed in me and did not suspect a psychiatric illness. 

Sitting in the neurologists office I explained all my symptoms and one critical bit of information which led him to test me for thyroid autoantibodies. Oddly,  I had found that antihistamines helped pull me out of my delirium and other agitated states but only for short times.

He explained to me if these thyroid results came back positive I would start a high dose of steroids. If the results came back negative he
would diagnose me with post inflammatory syndrome and there was nothing else he could do for me.

To my shock and horror he called 5 days later.  He explained my antibodies were positive.   I had autoimmune encephalitis. His actually diagnosis was “Steroid responsive encephalopathy of autoimmune thyroiditis”(SREAT). I was thrilled to have a diagnosis.  I rushed to the
chemist and even managed a few phone calls to friends and family!

It’s now been 18 months since the day my life changed forever. My disease has progressed in different ways.  I’m now having myotonic jerking and visual disturbances. I get night sweats and tremors. I have nightmares and I still suffer fatigue. I’m still aggressive on steroids but not as often as when I was on a higher dose.

These new symptoms are nothing compared to those early days where I felt my life was worth ending.



I want to take a moment here  for my family.  They watched me fall apart over and over again. My husband who felt like he lost his wife. My children who felt they lost their mother.  My mother who felt she lost her daughter. I have watched my mum and my husband break down.  It completely breaks my heart.   I am so thankful they stand by me even though I don’t show it much. Without them I would be lost in a dark world of nothingness. My children understand as best they can given their young ages. I will
spend my life fighting for them just as they have fought for me.


I am a very long way from recovery, however I try  to stay  positive and take this time to rest and reset. As for my cognitive abilities, I am still lacking in many aspects such as with memory loss and fatigue.  I am now able  to stay awake for a full day and do fairly normal house hold duties.

My AE journey will continue and hopefully,
with time and patience I will recover and develop into a new ‘me’.